Monday, May 21, 2007

- Forget to shave your legs- Forget to cut your toenails- Spend ages getting your new hair to look just right (forgetting that you're about to immerse yourself in, um, water)- Zoom around the Royal Free Hospital's corridors in a powerchair playing 'dodge the nurse' while taking out your antipathy towards the NHS on their non-automatic doors- Grab a take-away cup of tea, trying to drink it while you zoom down aforementioned (maze-like) corridors in a valiant effort to get to your appointment on time, spilling it all over the NHS's hallowed halls and causing porters to glare at you.

Last week I went to hydrotherapy with only my stick to help me, which turned out to be a bad move as I was in quite significant pain afterwards - not to mention the endless corridors I had to walk around. The Royal Free is one very confusing mess of hallways that go nowhere. I still can't find the visitors' cafe, although I did stumble upon it on my first visit there (when a physiotherapist made me cry). Anyway, I don't think I was judged too much for being in a chair. Physios tend to glare at walking aids as though you're committing a terrible crime by even carrying them around with you, but I seemed to get away with the wheelchair better than I do with my stick. Maybe they fear the DDA. Probably not, but I can fantasize.

So, yes. We found a flat. After two weeks of going around and around and around the houses, and finding that said houses were never even vaguely accessible (oh yes, says the letting agent, there's completely flat access to the house, and then we arrive and there are about sixteen steps up to the front door), we realised that we were looking at the wrong end of the renting market. Small one-bedroom flats and studios in this area are conversions of Victorian buildings. The Victorians liked steps, they really really did. Hundreds of the bloody things. As soon as we started looking at purpose-built blocks, 'ground floor' started to mean just that. Finally. Within two viewings we had signed a contract for a lovely little flat. Slightly run-down, maybe, but with two decent-sized bedrooms (we're going to get a flatmate in for the second), lots of space, flat access and outdoor storage for the wheelchair, and a massive area of shared garden that's set aside just for our use. I shall become a gardener, yes I shall. If I can find a chair that sits me close to the ground comfortably. Or a very large beanbag.

Church yesterday. God was definitely rolling his eyes at me, in a "I do keep telling you to stop worrying" type way. He finds me amusing like that.

Monday, May 14, 2007

This is a cross-post, as I am completely out of energy, and anticipate being so for some time. Sorry...

So, yes. Let's clarify what's going on in life ("Life? Don't talk to me about life") at the moment, since my brief updates have been rather crap recently. Basically, we're losing our home through a lack of money (technically it's more complicated than that, but it nonetheless wouldn't be happening if I could work). After a hellish week of flat-hunting, which led us to conclude that it's utterly impossible to find wheelchair-accessible housing in London, we have signed a contract for a semi-accessible place not far from where we live now. It's a very, very tiny studio flat (which means we'll be living in one room plus a small bathroom). I'm supposed to be getting help with adaptations to housing from the local occupational therapy department (who we really need to see, because of various problems with this place, not least the huge flight of stairs going up to it), but we've just found out there's a ten-month waiting list to see them. Nice...

I was just about coping OK with all this, until last night when I fell apart completely and had a fabulous two-hour panic attack. Today this was compounded when I dragged myself out to my hydrotherapy appointment and then found out it was cancelled. I burst into tears and ended up in a bit of a state, mostly because I'm in a lot of pain after last week's appointment and needed to see someone to discuss it. So they found me the physiotherapist, who sat and talked with me for a while. He was clearly really worried about my situation, and was offering to find me a better walking stick and so on, but I just had to get out of there as I was in a terrible state. However, I might take him up on that next week, as I keep falling...

Meanwhile, I was supposed to have an appointment with the mental health team today, but The Girl is working and can't take me, so that's had to be cancelled. They're hoping they can visit me at home, but I've no idea when that will be. In the meantime, I am really not coping. (Actually, I'm probably coping quite well under the circumstances, for someone with a history of mental health problems - but I would like to be coping better.) Oh, and we have to start packing everything up and selling almost everything we own, so that we can fit ourselves into the tiny studio flat... (All offers of packing help much appreciated - we will give you food in return. *grin*)

Oh, and I have to file my request for an appeal for Disability Living Allowance by Friday, because the idiots in the DLA office didn't bother to tell me until recently that I'd been refused it nearly a month ago (the details got 'lost in the post'), and so I've run out of time for that. Still wondering whether I should bother, given the stress it will cause me. I also still don't know what's going on with my Incapacity Benefit, i.e. whether I'll have any money to live on at all or whether it will all be taken away from me...

And finally: We invited the world's most fundamentalist, homophobic, boring and weird relatives (mine, ergo entirely my own fault) over for dinner, back in January when we thought they were sure to refuse. They said yes. Of course, we didn't realise back then how much stress we'd be under now. I'm trying to get my brain and body to stop threatening to hurt me in cruel and unusual ways, The Girl is working both daytime AND evenings on different shows, we have to move house and sell all our stuff, we may be too poor to feed ourselves quite soon, and now we're having bigoted scary relatives (and their son, who is, um, difficult) over for dinner. OH MY GOD. Anyone else feel like the world hates them and wants them to know it?

The Great London Trek went well, which is the one bright spark in everything that's going on at the moment...! We'll be collecting pledges this week, and The Girl promises to write a proper update about the walk itself at the Trek blog very soon.

Friday, May 11, 2007

Can't manage much of a post, as I'm off to join The Girl in the Great London Trek...! So, in brief: house-hunting is appallingly stressful, and it's only our second day on the case. We're having to down-size massively, and it's a pain. Between the need for good access (which just does not exist in most of London's housing) and the fact that I get tired verrrry easily, I think this move is going to be difficult. The stress of only being able to afford somewhere very tiny, unless we make a huge gamble/take a big risk, is also rather exhausting. I mostly want to sleep. But we soldier on - in this case, across London for FMS Awareness Day. The Girl is already near the centre of town, so she's going at quite a pace! Proper updates on the walk to follow once we've finished it.

There will very soon be a final Fibro Friday update from me at the Great London Trek. Happy International M.E./CFS and Fibromyalgia Awareness Day (tomorrow), all.

Monday, May 07, 2007

Only a week too late for Blogging Against Disablism Day (punctuality is overrated), I want to tell two stories, about visibility and invisibility.

The first involves me and my wheelchair (good old Marvin, who is still falling apart beneath me on a regular basis, but gets me to the libraries and bookshops). I'm in a cafe which shall remain nameless because its reputation would do nothing for the I live an ethical lifestyle and believe in social justice image which I am keen to hang on to. Having paid for my food, and while waiting for the helpful server to bring it to me, I've just moved away from the counter to put my money away. I reach for my bag, but I leave one strap across the back of the wheelchair - much as I keep one strap over my arm when I reach for my bag while I'm walking.

Suddenly, a staff member who has clearly had too much of the wrong sort of disability awareness training grabs the strap of my bag. I don't hear her say "Here, I'll help you," because I'm busy panicking that someone is trying to rob me. I grab it back and yell "Get off me!" before realising that she actually thinks she's being helpful. I back away from her at 4mph, suggesting that she might want to ASK next time before being that helpful again. This incident is then almost repeated, with just slight variations on a theme, when a cleaner makes a similar error in judgement about whether I want to transfer into a chair or not. (I don't.)

This is a fairly average experience for a person using a wheelchair, and I've only just begun to experience the whole world of weird ways in which people react to me when I'm not so much walking as the other thing. Still, I don't mind that much. I mean, obviously I get irritated on occasion, and in this instance I was all ready to write to the restaurant involved offering them half decent equality training to go with their exciting new ramp and automatic doors. (They'd have been so pleased.) But there's a reason why I didn't.

The second story takes place with my stick. (I haven't named her yet. Suggestions on a postcard, please.) It's hard to choose just one story, since there are so many like this, but let's go with another experience at exactly the same cafe, to make all things equal. I spend five minutes standing in the queue, with no facilities offered for those of us who can't stand for that long without significant pain resulting. I ask for help and am ignored. I get my food and drink (no offer to bring it to my table this time) and struggle to carry it to my table, limping across the cafe with my stick under my arm. Just as I'm nearly at a table, my tray flings itself towards the floor, in that way that things I'm carrying have a habit of doing. After a silent moment in which I curse Fibromyalgia and all its minions, I bend down and struggle to pick up whatever I can reach. Every head in the room turns towards for me, then turns away again. Does an ever-caring staff member offer to help? What do you think? Eventually someone cleans up the mess, but I'm already half-way out the door by that point.

This situation, too, is not uncommon. I feel just as ignored and embarassed every time I get complaints because I'm slow to get money out of my purse when my hands aren't working, every time I stand with my stick in full view of everyone in a crowded train carriage and don't get offered a seat, every time someone gives me that but you're young and healthy look when I go into an accessible toilet. Amusingly, most of these incidents take place while I'm carrying a stick - I'm not even that hard to spot. I no longer leave the stick at home, even on the few days when I don't really need it. And things are even trickier for those whose impairments are completely hidden.

Invisible disability has two aspects: impairments that cannot be seen and social prejudice that is rarely recognised. I'll never forget my wheelchair-using colleague who once told me, at an NUS Disabled Students' conference no less, that mental illness and other invisible conditions "aren't really disabling" and that I should just be thankful I could walk. Or the Deaf friend who took offence when his hearing impairment was referred to as a hidden disability and responded with an irate "No, it's a real, physical impairment" - implying that invisible conditions are not. That's when I first realised that I was, once again, lost in a limbo of invisbility (one might cross reference bisexuality here). In celebration of Blogging Against Disablism Day (even though I missed it), I'd like to highlight the prejudice and stigma associated with so many impairments that can't be seen, and the reality of invisible disability.

So I shall keep on laughing at the stupid people who think they're being helpful or nice or inclusive by treating me like an idiot when I'm using a wheelchair. They need educating, absolutely, and they need to rethink their attitudes. But I, personally, prefer those 'trying to be helpful' attitudes to the way I get treated when I'm invisible. I'm sick of everything from "You look fine to me" to suggestions of miracle cures to it's all in your head syndrome to being ignored by social services to being turned down for benefits to being mistreated by ignorant doctors to being ignored by the world. Invisible disability. It exists. We exist. We complicate things - social policy, medicine, education, employment, the law. And we're a fairly permanent fixture. Hi there. :)

So in celebration of Blogging Against Disablism Day on 1st May, remember that many disabled people get lost in the crowd a whole lot. Ever thought of offering your seat on the bus to the person who looks like they need it? It might make them more irritated than you can imagine. Or they might appreciate it more than you can imagine. If it were me? It could go either way. (Isn't that the nice thing about being an individual? Not to mention a manic depressive. *grin*)

Little update... Social care has been approved and is being sorted. DLA hasn't, and I may appeal. Lyrica is helping with pain. Life is crazy. We need to move house (again) and I don't know how we're going to find somewhere with half-decent wheelchair access which we can also afford. Hydrotherapy is incredibly painful, but good. I love my girlfriend, of whom I am particularly proud this week. I am happy. Don't forget the Great London Trek - it's this Friday, so please get sponsoring us! Help raise awareness of one of those invisible conditions that need to be taken much more seriously by medical professionals and many others in the UK. And thank you!